[Nervous]

Originally Posted by mrsD

Then, some new data emerged that some of these high dose patients were showing up with colon cancer at a young age.

I read this on this site. It is why I raised the question.

Thanks again.

[mrsD]

Back in 1999 we were all on the "older format" at BT, some of us that is...

rose appeared there with her experience with low B12, and she used to provide the AMA Journal paper by Dr. Chris Snow MD which appeared that year and was a turning point for medicine in this country, for interpreting serum B12 levels. For a while this paper was only available to members of the AMA and it was not online. Rose sent me that article thru the mail, back then as she did for many other posters.

Well, that article is now available online and here is the link to it:
http://archinte.ama-assn.org/cgi/con...ll/159/12/1289

As discussed above, patients with Cbl deficiency may have overt neurologic disease in the absence of hematologic findings. Patients with neurologic symptoms and signs and a normal complete blood cell count require a modified diagnostic approach because of several considerations. First, folate deficiency is an unlikely cause of neurologic disease. Second, the neurologic disease of Cbl deficiency may be irreversible if treatment is withheld or delayed; because Cbl therapy is nontoxic, the risk-benefit ratio favors treatment in questionable cases. Finally, an apparent response to therapy (or lack of response to therapy) is less definitive in ruling in or ruling out Cbl deficiency than is the serial measurement of abnormal initial hematologic parameters. Even in patients with a normal complete blood cell count, it may be worthwhile to monitor the MCV after treatment because a significant decline within the normal range provides additional evidence of Cbl deficiency.

An approach to the diagnosis of Cbl deficiency in patients with isolated neurologic findings is outlined in Figure 4. Relevant to the development of this algorithm is a study23 of 419 patients with Cbl deficiency, 12 of whom had serum Cbl levels greater than 148 pmol/L (200 pg/mL). All 12 had elevated levels of serum Hcy and serum MMA. Five patients with normal serum Cbl levels had neurologic disease, and 1 of the 5 had a level greater than 221 pmol/L (300 pg/mL). All 5 patients had a clinical neurologic response to Cbl therapy and normalization of metabolite levels.

(note: picomoles is a European and other country lab report, and we use pg/ml in US-- this link explains how to convert them:
http://neurotalk.psychcentral.com/post627358-43.html )

This article is often quoted in the bibliographies of other papers now, so it is nice to have it to refer to. Some of the information and graphs in it were picked up by AAFP, in their online reference for doctors, in 2003. I gave that link in the first post on this thread, so I won't repeat it here.

Over the years the formulas for oral B12 have changed. I have yet to see the new enhanced absorption one yet, but I understand it is coming. Methyl B12 (bioactive form) oral is available now and it supercedes the cyano (which is not active and is synthetic) by far. Methyl B12 is also available by injection from compounding pharmacies and is mostly used by the autism community, but any doctor can order it.

Also parallel discoveries in pharmaceutical dosage forms and bioavailability about microgram absorption of drugs failing when food is present in the GI tract (esp. fiber) have not yet trickled over to oral B12 recommendations, we often see in papers.
Thyroid and digoxin have been found to not be absorbed when food is present, so now carry the recommendation to take on an empty stomach. Since the oral forms of B12 are in micrograms also, and since they are passively absorbed orally, this recommendation I think should apply to them. Testing for intrinsic factor (the Schilling's test) has been dropped by many labs today. So many doctors and patients have no idea if they have working intrinsic factor or not. The antibody test to parietal cells is sometimes used but it is expensive and often not done either. When intrinsic factor is working, oral B12 will be absorbed better. But when people present with significant neurological symptoms one has to wonder if intrinsic factor is NOT working as it should. So expecting only passive absorption of B12 in the intestine is what we have to go on.
The AAFP link has some nice color illustrations to show how B12 is absorbed ideally, so please check that out.

[MelodyL]

I have a question about Colitis. I'm putting it here because this is about vitamins and minerals, etc.

If a 31 year old woman has colitis, and everything she eats goes right through her, shouldn't she be taking SOME SORT OF VITAMIN SUPPLMENT, B-12, Omegas, I mean, shouldn't a person who goes to the bathroom all day long, well doesn't that imply that she is NOT getting any nutrition whatsoever.

This person weighs about 110 lbs, is tall, very very thin, smokes all day long and drinks more than one should drink.

So isn't this a time bomb waiting to go off?

I know that a regular person doesn't quite get all their nutrition from food, but wouldn't a person with colitis have to be especially diligent about supplementation?

I've mentioned this to her family. They think I'm nuts.

thanks much

Mel

[mrsD]

She should get tested to see what is going on. B12 is absorbed before the colon. She might be getting more than you think. However, potassium and magnesium may lost more thru diarrhea. Crohn's is more damaging for malabsorption.

It is hard to say, she should be getting counseling from a dietician at the doctor's.

mrsD

Originally Posted by MelodyL

I have a question about Colitis. I'm putting it here because this is about vitamins and minerals, etc.

If a 31 year old woman has colitis, and everything she eats goes right through her, shouldn't she be taking SOME SORT OF VITAMIN SUPPLMENT, B-12, Omegas, I mean, shouldn't a person who goes to the bathroom all day long, well doesn't that imply that she is NOT getting any nutrition whatsoever.

This person weighs about 110 lbs, is tall, very very thin, smokes all day long and drinks more than one should drink.

So isn't this a time bomb waiting to go off?

I know that a regular person doesn't quite get all their nutrition from food, but wouldn't a person with colitis have to be especially diligent about supplementation?

I've mentioned this to her family. They think I'm nuts.

thanks much

Mel

[MelodyL]

Originally Posted by mrsD

She should get tested to see what is going on. B12 is absorbed before the colon. She might be getting more than you think. However, potassium and magnesium may lost more thru diarrhea. Crohn's is more damaging for malabsorption.

It is hard to say, she should be getting counseling from a dietician at the doctor's.

mrsD

I hear you Mrs. D, but that's NOT GOING TO HAPPEN IN THIS LIFETIME.
Some people never listen and never learn (until they wind up in the hospital). So far, she's been very lucky. She hasn't been to a doctor in YEARS. Her whole family has a history of colon cancer and everyone else gets regular colonoscopies, etc. Not her. And she doesn't eat anything that contains B-12. She'll just eat any kind of fast food and then she'll go to the bathroom.

Thanks much for your information.

Melody

[Mo02]

Hello,
I found this site yesterday. The information on this thread is amazing!!!
I will try and make my story as short as possible, even though I could go on forever!. I became ill in November of 2009. I was diagnosed with B12 deficiency in December of 2009. At that time my level was 86. I was immediately started with one 1000 mcg Cyanocobalamin injection a day for 5 days, followed by weekly shots until May. Since May I have been getting injections every 3 weeks. Life has been a rollercoaster, to say the least.
Last week I saw another doctor. A neurosurgeon. He diagnosed me as having (I hope I get it right) Subacute Spinal cord degeneration. In the past 11 plus months I have been seen by 9 neurologists, including the ones that I had seen during an 11 day hospital stay in August, have had countless tests done and now finally a diagnosis!
My B12 goes up and down with the highest being 600 on August 27th (after 5 consecutive days of shots). As of October 12th it was sitting at 284. I am due for another check the end of November. I have this feeling it will be below 284.
Questions I have........ should I be taking Methylcobalamin orally each day along with getting injections every 3 weeks?
The results of the MMA and Homocysteine tests would not be accurate if they were done after a run of daily shots for 5 days?
Why does my level not stay up?
My antiparietal cell antibody test came back positive ....... is that a positive for Pernicious Anemia? Some tell me no, some tell me yes.
I am forgetting alot of questions but will leave it at that for now.
I will continue reading more of this thread

[MelodyL]

Hi, I'm sure one of our knowledgable B-12 experts will hop on board and give you lots of good info.

I can only tell you what I take. I take 5000 sublingually every day. My last level was 2000 and I gather it's much higher now. With absolutely no ill effects. My husband's level is over 3000. He has neuropathy. The Methyl B-12 helped MY neuropathy because I'm diabetic. It didn't do a thing for my husband, unfortunately.

I do not take cyano.I take straight Methyl B-12.

On an empty stomach. First thing when I wake up in the a.m.

Listen to the others who come here and then you can decide for yourself.

Melody